Hirschsprung's Disease - Surgery

Did your child have surgery to treat Hirschsprung's disease? Please share your experience.

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What will my child's life be like after surgery?

After Ostomy Surgery

Infants will feel better after ostomy surgery because they will be able to easily pass gas and stool.

Older children will feel better, too, but they must adjust to living with an ostomy. They will need to learn how to take care of the stoma and how to change the ostomy pouch. With a few changes, children with ostomies can lead normal lives. However, they may worry about being different from their friends. A special nurse called an ostomy nurse can answer questions and show how to care for an ostomy.

After the Pull-through Procedure

Most children pass stool normally after the pull-through procedure. Children may have diarrhea for awhile, and infants and toddlers may develop diaper rash, which is treatable with diaper creams. Over time, stool will become more solid and the child will go to the bathroom less often. Toilet training may take longer. Children often must learn how to use the muscles of the anus after surgery. Some children may leak stool for awhile, but most will learn to have better bowel control as they get older.

Diet and Nutrition

After the pull-through procedure, children with long-segment Hirschsprung disease need to drink more fluids. Now that the large intestine is shorter, or entirely gone, it is less able to absorb fluids the body needs. Drinking more helps make up for the loss.

Some infants may need tube feedings for awhile. A feeding tube allows infant formula or milk to be pumped directly into the stomach or small intestine. The feeding tube is passed through the nose or through an incision in the abdomen.

Eating high-fiber foods can help reduce constipation and diarrhea. Fiber helps form stool, making bowel movements easier. High-fiber foods include whole-grain breads, vegetables, and fruits. Some children may need laxatives to treat ongoing constipation. Consult a doctor before giving a laxative to your child.

Infection

People with Hirschsprung disease can suffer from an infection of the intestines, called enterocolitis, before or after surgery. Symptoms include

  • fever
  • swollen abdomen
  • vomiting
  • diarrhea
  • bleeding from the rectum
  • lack of energy

Call the doctor right away if your child shows any of these signs.

Children with enterocolitis need to go to the hospital. An intravenous (IV) tube is inserted into a vein to give fluids and antibiotics. The large intestine is rinsed regularly with a mild saltwater solution until all stool has been removed. The solution may also contain antibiotics to kill bacteria. A temporary ostomy may be needed to help the intestine heal.

Sometimes infection is a sign of a problem with the pull-through procedure. More surgery may be needed to correct the problem and prevent future infections.

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